When Will was four, an alphabet soup of diagnoses followed his name: SLI (speech and language impaired), SID (sensory integration disorder), FMI & GMI (fine and gross motor impairment), BI (behaviorally impaired), MI (mentally impaired), etc. Amazingly, he did not fit the profile for ADD or ADHD. Acronyms had to be used in part because there was not enough room to type his diagnoses on the Individual Education Plan Forms.

Eight weeks before our visit with Dr. Smith, a thick packet of paper arrived in the mail.

Half of the papers were Authorization for Release of Information forms. I was instructed to sign and date the forms and return them, along with a list of all the doctors, therapists, and schools involved with Will’s care.

The other half was a Parent Reporting Form. The first page consisted of demographic questions (Name, date of birth, address, parents’ name, etc.).

The second part of the form was a long list, with instructions to check off the items that pertained to Will. The items on the list varied from the mundane (preterm birth, full term birth, weight at birth, ethnic background, 1st language, etc.) to those which identified characteristics due to developmental differences.

Some of the significant items for Will, along with my comments:

Unusual fixation or fascination with objects – Will was utterly fascinated from a very early age with lights. When he was a baby, he would twist himself around in his high chair to to view the lights through his half-shut eyes, looking through his eyelashes. I worried at the time that he might do psychedelic drugs when he was older. Later, when he could actually reach light switches, he turned them on and off constantly. It was like a disco at our house. We moved the furniture away from light switches. That helped until he was tall enough to reach the light switches. He made it his business to find out where the light switches were in every building he entered. When he was three years old, he escaped from the nursery at church and found the light switches to the sanctuary. The lights flashed on and off during the Sunday School class. A deacon came out to discover a giggling three year old playing with the light switches. After that, they made sure the doors to that bank of switches was always closed.Lack of eye contact or qualitative difference in eye contact. Will not only had very fleeting, if any, eye contact; he actively resisted efforts to encourage or force eye contact. My mother would hold his face in an effort to get him to look at her when he was naughty. It was futile. Once, when we were talking to his preschool teacher when he was eight years old, he twisted his body in all different directions to avoid making eye contact. We instructed him in eye contact and practiced it. He eventually made eye contact with his father and me, but nobody else. He could read our faces, but he had extreme difficulty reading the faces of strangers. We found that forcing eye contact completely obliterated his ability to listen, so when we needed to emphasize behavior changes, such as not running across the street, we sat next to him and talked to him.

Sensory differences. Did I say lights? Also, he was highly sensitive to touch. He was extremely ticklish. He couldn’t stand any tags in his clothing, and he did not want to wear knit clothing. One of his therapies was brushing him down with a soft brush to improve his tolerance to touch.

Impaired social interaction. He could not initiate and/or maintain interaction with children his own age. He had extreme difficulty making friends. He screamed if any of them came near him. As a result, he was very isolated.

Constant talking. He could talk all day about Power Rangers long, long after I had lost interest in the subject. Later it was video games. And still later, it was computers.

Insistence on sameness. He always had to have the green plate, the green glass, the green toys. He would wear green clothing if he had the choice. We often gave him the choice because we had other battles to fight. He became upset if we took a different route to church or the store.

Difficulty transitioning from one activity to the next. Will would scream if it was time to change activities before he was ready. Changing from story time to outside recess was especially problematic.

Perseverative behavior. Will would open and shut doors over and over again. We had to put spring loaded latches on all the doors in the house because we were afraid that Will would shut his sisters’ fingers in the door.

Articulation difficulty. Will was difficult to understand.

High pitched and sing-song voice. Will’s voice was very high pitched. He also talked in a sing-song tone of voice. His inflection was off. In American English, the pitch of the voice typically rises at the end of a question and goes down at the end of a statement. Will’s sing-song inflection affected his intelligibility.

Gross motor delays and hand eye coordination. Will couldn’t bounce a basketball. He never learned to ride a bike.

Fine motor delays. As a result of his fine motor delays, Will took much longer to learn to tie his shoes and cut his own food. His writing was labored, slow, and very difficult to read.

Etc., etc.

The last part of the Parent Reporting Form consisted of several essay questions. Do any other members of Will’s family have developmental issues? Describe a typical day in the life of your child. Do you have any other concerns about your child?

I spent three hours checking items on the list, and writing out the answers to the essay questions. Toward the end, tears rolled down my cheeks. On one hand, it had taken three years to get approval from our insurance company to have Will evaluated by Dr. Smith. On the other hand, I felt that I was betraying my son by telling the truth about him. Because I loved him with all my heart, I wrote the truth, unadorned. Then I sent the whole packet back to the doctor.

Within 20 minutes, Dr. Smith diagnosed Will with extremely high functioning autism (HFA).

Every year I had to check off a list of characteristics and write answers to essay questions to prove that he still qualified for autistic impaired services. Every three years, I had to fill out a more extensive list. I filled out lists like this for his sister as well. Sometimes I felt very discouraged.

Will is an adult now. He still has autism, but I no longer fill out any lists or write short essays. I have always believed God has a plan for him – that is our encouragement to him and to ourselves. He has a very good job as a web design consultant for a large corporation. He cooks, drives, and keeps his apartment reasonably clean.

All the checklists and essay questions were worthwhile. Truth telling, unadorned, turned out to be for the best.

When we began going to autism workshops and conferences, we found ourselves the subject of many sales pitches for the newest therapies that would produce miracles.

We also were sometimes pressured by parents in the local Autism Society to make a commitment to purchase a certain therapist’s services in order to “bring her to our community.” Enough parents had to participate in order to pay for her services to make it worth her while to come. Auditory integration training would cost $2,000 for a set number of therapy sessions. Music therapy was $100 an hour.

There were two problems with this.

First, we could not afford it. We were just scraping by as it was. Several options were presented – beg the money from our relatives, put it on a credit card, get a bank loan or a second mortgage on the house.

Second, which one of our children would we choose? Choosing them all was out of the question.Should we choose our gifted, disruptive autistic son or our quiet, multiply learning disabled autistic oldest daughter? Or our youngest, questionably autistic daughter? An impossible choice.

Therefore, we said no. As result, we were ostracized for not “participating for the good of all the children in the area.”

Instead, we chose to invent our own therapies out of ordinary life.

We listened to classical music in the house for our music therapy.

We were blessed by a piano teacher who was willing to try to teach my son. He enjoyed music, singing in tune with gusto. After a year, she noted that he had an aptitude for music. She taught him for 12 years. After that year, we ask her to teach our oldest daughter in order to improve her finger strength and coordination. I thought it might help her learn to hold a pencil. My youngest daughter wanted to do what her brother and sister did. This cost $10 a week per child – a pay as you go therapy.

We chose to take advantage of community subsidized speech and occupational therapy offered by Easter Seals and the Rehabilitation Hospital. These required small payments times three.

In spite of extended and persevering effort, learning to ride a bike did not happen. Instead, we found equestrian therapy – offered at a discount due to the generous donations of the community – also paying as we went. Our children were unable to ride a bike due to balance issues, but they were able to eventually learn to ride a horse independently.

These choices stretched us financially, sometimes heavily, but we made the sacrifices on a weekly, monthly basis. Choices of “miracle therapies” with little proof of efficacy would have bankrupted us.

I went (to church) even though I was still sick, because I wanted to see my kids in the Christmas Program. And what I saw was a little upsetting. Instead of just enjoying my kids, I find myself constantly evaluating them – especially in comparison to other kids.

Mary was up there, she didn’t even try to sing the songs (of course she’s been gone and missed the practices). In addition to that she picked her nose. Isn’t that attractive? Will had his finger up his nose half the time, too.

But Will did not sing the songs. He kept pointing to the light in the globe and saying, above the other children’s singing, “There’s a light in there! A light in there!” And he kept turning around and around.

I am past the point where I think it’s cute. This behavior is beginning to worry me. Continue reading →

My older daughter Marie is having difficulty achieving the next steps toward independence.

It has been difficult to find a job…her handicap is more evident than her brother’s. Her learning disabilities, while much improved, hamper her. Spelling IS important. She may not be able to spell well, but she can write a decent paragraph. Maybe dictation would work for her. She is good with numbers. Very good. She loves accounting. (Boring, utterly boring, in my opinion.)

This next week she is going to have an on-the-road driving test to see if she is capable of learning to drive. We received her in-house evaluation and she still has some of the deficits that resulted in the prohibition of driving lessons three years ago. But those deficits have improved enough that she is going to be allowed to take the road test.

Her brother has moved 70 miles away for his new job. She said she would like to hunt for accounting work in his city because the busing system is so much better and there are more openings in her field. However, she needs to find out if she can take driving lessons. If she passes, she will need to stay home to be instructed in driving. If she fails, she can look for work in her brother’s city right away.

Inability to drive is a barrier to employment in America, where the cities are far apart and public transportation is inadequate except in the biggest cities. In our city, she makes the decision about whether to apply for work or send a resume based on whether the location is on the bus line. Many positions are in the suburbs where there is no bus service.

She has developed many skills in her quest for independence. She can cook, do laundry, clean, and hunt for work. She can ride the bus independently and she enjoys walking downtown and taking herself out to lunch or meeting me for lunch.

She needs a miracle. Waiting for the next step is difficult. It seems an insurmountable barrier, a wall to climb over. However, she has surprised us before and probably will again.

I am praying that she will be a blessing to those who hire her and that they will be glad that they hired her.

A new definition of autism will be coming out in the next year. Some doctors say that it will stop the explosion of autism diagnoses. Many people diagnosed with Asperger’s syndrome or PDD.NOS (pervasive developmental disorder, not otherwise specified), would no longer be on the autistic spectrum.

The proposed changes are in the article below. My two older children meet both sets of criteria – even though they are cognitively able and very high functioning. My younger daughter does not qualify under the new criteria, which makes sense – and supports her contention that she does not have autism.